Hypoplastic Left Heart Syndrome (HLHS) was diagnosed at our ultrasound at 18 weeks.
This is a blog about a Congenital Heart Defect (CHD) called HLHS and our journey with Isabelle; our visits to University of Michigan and C.S. Mott Children's hospital; and our life.

Saturday, August 10, 2013

The eve of Sept. 17, 2012

Monday Evening

Isabelle will arrive tonight!

As I sat there in the hospital bed of my "delivery" room, I worried about everything! I worried about Adam leaving safely in a panicked rush from his job to be by my side and to care for Chloe. I worried about Chloe getting lunch and her needing to take her nap because I knew we were facing a long stressful evening. I worried about Isabelle, unsure of what was going on and why this was happening! WHY? I couldn't HELP but worry by this point! My nurses would come in to check on me, and to check on all the other important things they needed to do. Once they received my full record and got a better understand for themselves as to what was going on and learned about Isabelle's heart condition, I could almost feel their concern and worry. Every once in a while they'd come in to check and see if I or Chloe needed anything and told me that my doctor, Dr. Schroeder, was on her way to see me. The door opened again, only this time it was Adam and I felt so relieved to see him! It was in that moment of seeing Adam, I could feel the "lump" in my throat form and the tears beginning to fill my eyes. I can't recall exactly what I said to him, but like any mom I shared my worries about Chloe getting what she needed. As far as me and Izzy, we were still unsure of what was going on or what was going to happen. I just remember feeling so much better once Adam was there. At some point, Dr. Schroeder came into the room. She was obviously quite concerned and expressed to us that Isabelle must be delivered tonight. Dr. Schroeder had been watching the monitors out at the nurses station, I assume, because she commented on how even since my admittance, Izzy's condition has declined ~ that her "scores" were low. So she was going to be making phone calls to Mott's in Michigan to get their opinions and thoughts on what we should do. She even made the comment that she'll deliver me here, but she'd rather not, just because of the extensive care Izzy was going to need. She said she'd be back in a little bit to tell us what was going on. Evansville had been experiencing lower than normal rainfall amounts for 2012, that is until September 17th. I even looked it up on the web (weatherspark.com) and here's what it said, "The day with the largest quantity of precipitation was September 17. That day saw 2.217" of liquid (or liquid equivalent) precipitation, compared to a median value of 0.190""So, what's all the mean for us at this point? Well, Dr. Schroeder came back into the room and sighed a BIG sigh, and said that Mott's could not "take me" now because of the low scores Izzy presented during our BPP study earlier that day. Mott's wouldn't want something to go wrong mid-flight, nor could they send a helicopter because of the weather conditions but they would work on getting a team together to fly down by a "winged" plane to pick Isabelle up and take her back to Mott's. She also said that she called Riley Children's Hospital asking about me being transported there, and they also said no based on the BPP scores, it was just too risky; plus the weather was too bad. So, now you can see how the weather played into all this mix! THANKS Mother Nature!!!! So Dr. Schroeder said she needed conformation that we'd go ahead and do the c-section here, in Evansville, and she'd notify Mott's. Of course we agreed, what choice did we really have? Dr. Schroeder came back moments later to tell us that we'd be going back for the c-section once she was notified by Mott's that a team was formed and on their way here, to Evansville. I can't recall the timeline of the above events, it all blurs together now. I do know that Adam had taken Chloe home to try to get her a short nap, and to RELOAD the car with our suit cases. Naturally, I was in the middle of changing out most of Chloe's suit case from mostly summer stuff to add some fall clothing, because the weather was much colder in Michigan than I thought it would be, and knowing we'd be in Michigan a while, I wanted some kind of warmer clothes for Chloe. I just told Adam to shut the suitcase and we'd deal with that all later. I felt SO BAD for Adam, I know he had to be under a TON of stress! Having to deal with all the suit cases, making sure he grabbed Izzy's suit case along with all the other "important" items and papers and repack the car after we JUST had unpacked it from our previous trip thinking that Mott's MIGHT just keep me there and deliver us then ~ back on the previous Thursday! On top of all that, I am absolutely certain he was worried Izzy and I; and he's having to call family to tell them what's going on ~ and he's alone! No family, no friends to call to have them come help us out during this crisis. Everyone we knew lived at least 4 hours away! Things just weren't going as we'd planned!! And of ALL DAYS... it's raining TODAY!

Well, like I said, I can't remember the timeline of all the events, but I do remember having to call Adam and tell him to forget packing, they are going to be doing the c-section soon, as in the next 1/2 hour. I just remember crying to him, telling him "Forget packing, come back now". Next thing I know, in comes Adam & Chloe. They gave Adam these paper type surgical clothes to put on over his own clothes for the surgery. We looked at the nurses and asked about what we are supposed to do with our daughter? Who can watch her because we have NO ONE here that can. They said they'd find someone and not to worry. They did, they found a sweet nurse who took Chloe by the hand to walk her to the BIG fish tank and just hang out with her. We said it was okay to give her what ever to eat, she's not allergic so do what you need to do to keep her happy and we thank them profusely!!

Chloe wasn't really thrilled about taking a photo!!

In tears by this point, I am taken back to the OR for my spinal. Compared to my epidural with Chloe, this spinal was a nightmare, and my epidural was no walk in the park either! After the anesthesiologist finally got it placed, at the VERY end it hit a nerve or something and my right leg, uncontrollably, kicked up straight into the air! THEN a horrible pain set in! It felt like from the tips of my toes to my rib cage the tingles from when your foot falls asleep, you know how some times that tingle sensation hurts a bit; well multiply that by 1000! EVERY single thing hurt, from them touching me, the sterile prep they were placing on my tummy to even "feeling" the sterile drapes being placed on my body! Being a surgical technician, knowing what's happening behind those drapes makes things worse sometimes. THIS was one of those times. I was terrified the whole surgery was going to feel this way because this sensation lasted FOREVER! I remember Adam being brought in, I was crying, he was trying to console me and then that pain was gone. What a huge relief! IT WAS TIME! I heard the clinking of surgical instruments the other surgical "noises". The room was FULL of doctors and nurses all patiently waiting for Izzy to be born ~ yet it was SO quite! Before I knew it, I felt "the pressure" from when the nurse or surgical tech is pressing on my upper abdomen to help push the baby out and I knew Izzy was on her way and the tears began again. At 5:21 pm on Sept. 17, 2012 Isabelle Grace flew into our world! Then, there it was, the most beautiful sound in the universe ~ her tiny little cry; ohh so sweet, so fragile, and it was much too short! Whisked away to the warmer to be cared for and worked on ... and intubated. I recall asking (or telling) Adam to go get a picture of her quickly before they intubated her, but as I looked up at him, I saw his tears and he was shaking his head "no" ~ So I knew then... it wasn't a good time and I just shut my eyes and cried some more. But at some point, he must have gotten up to snap a photo of her, just after they intubated her and before they wiped her clean and wrapped her up. Then I remember a man, a Doctor, with a STRONG accent leaning down and telling me where they were going to go with Izzy and what they were going to do but he wanted me her adorable little face before they left with her. To this day, I have no memory of what he even said to me. Then he was gone in a flash, I must have panicked or something because I felt as if I couldn't not breath, or that I was beginning to suffocate and I just remember calling out for Adam. I don't remember much else, expect after I felt better, Adam left to go be with Chloe as they finished up sewing me back together and then I was back in a post-op room and there waiting was Adam and Chloe.

Then it happened, I started feeling quite ill to my stomach! Oh-no, this is going to hurt I though to myself! Then Adam was at my side, trying to help me the best he could. I don't know what I would do with out this man in my life! He's ALWAYS there for me, I love him SO MUCH! Unfortunately, during this indecent moment, the Chaplin knocked on the door and peeked into our room, seeing it wasn't a good time, he quickly left. Come to find out much later, he was there to tell us he was going to go see Isabelle and baptize her as we had requested. I have no idea what time it was at this point, but some nurses came into the room to take me down to the NICU to see Izzy. Adam decided to stay behind and stay with Chloe (she wasn't allowed in the NICU) and he'd go at a later time. If I could have walked myself ... I would have RAN to her ... but instead, I had to be wheeled in my bed .... which felt like the longest trip of my life! "Here I come Isabelle ... Mommy's coming ......"